Chronic illness: the parts we don't talk about

Lord help me please. It’s tough being a mum

I promised myself that I would never do this. But I did. I knew it would hurt my child but I did it anyway.

I let two adults hold her down while she was kicking and screaming while another performed a medical procedure. And one of the adults holding her down was me.

But how did we get here? How did we get to this sunny day, full of hope of the lightheartedness of sumer, but doused with an icy blast to my heart like the arctic ocean has crashed down on me?

It’s a long story but I will try to keep it short.

She has developed a fear and trauma about having her mickey button changed. She’s been through EMDR to deal with the trauma. She and her psychologist made a plan to deal with some of the scary things:

Seeing the whole in her body where the mickey sits. I’m not surprised she is scared, it gives me the heebee geebees just thinking about it. So what’s the plan? She gets to watch the mine craft films on youtube that she loves

Seeing all the medical equipment laid out makes it feel like an operation. So we would keep that covered.

Everything was arranged. The psychologist was there. She had picked out her present that she would receive after her new mickey would be replaced.

Then she woke up this morning and it all went to hell. Her first event of fear and anger was pretty bad. So upset she started vomiting. I was taken back to the last time her mickey button exploded and I had to be a tough mama.

How do you get through to your child when she is out of her mind with fear? You can only tell them that you hear them. Over and over until they calm down.

The major event was at the hospital. We had agreed that J and I would not be in the room. F wanted it to just be the psychologist and the nurse. It was time and then she went wild. I can’t even call it a tantrum because it wasn’t. It was so much worse. It was a frightened girl who would do anything to make sure that she could day no.

I wholeheartedly believe that she should be heard and that we should take a “no” from a child seriously. But without her treatment, she would die.

And her treatment isn’t nice. Half the discomfort she feels comes from her medicines. And we can’t afford to have her refuse treatment. Ever.

If I listened to her no today, what would I do when she needs an IV? An IV placement is painful and she has really thin veins so it can take 30 minutes or more to secure one. 30 minutes os someone poking a needle in her. What if she says no then?

And her IVs always need to have potassium. That burns. What if she refuses that? Her potassium levels can drop so quickly that she could have a heart attack. It may seem far fetched but sadly we lost someone in the Bartters & Gitelmans community this way about a month ago.

With her condition, when she needs an IV, it means that she is seriously ill and needs it right away. Not when she has calmed down. Not later. No time for discussion. Now.

If I listen to her “no” now, it opens the door to her saying no more often. And we can’t do this. I can’t do this fighting every time.

I can’t let her say no. It’s either take the treatment or get life threateningly ill really quickly. And then give her the treatment when she becomes unconscious. And providing it’s not too late, maybe her kidneys won’t get damaged. Maybe she won’t die.

So that’s how I came to be holding her down on the hospital bed. Her arms being held by me, her legs by another nurse. And a third nurse changing her mickey button.

Her father carried her to her next appointment (it never stops with a chronically ill child). We bought something for her to eat along the way. She smiled eventually.

We will follow up with the psychologist later. She had never seen anything like this in her entire career. The strength of resistance. But we will regroup and look at how we can support F so that it isn’t so traumatic next time.

But I feel like crap. I want to eat bread. Even though I’m on a 3 week gluten free diet I want to scoff bread there’s a wheat famine approaching. But, given the very real medical reasons behind my gluten free diet, that would be like bashing my head with a sledgehammer.

So why did I do it? Why did I choose to be the one in the room with her? I know that J would have done it. But I just knew that I could get her to relax her stomach muscles. You see, she can scream, kick and relax her muscles at the same time. I don’t know how she does it, but she can. You see, it’s impossible to put a mickey into the whole in the stomach if your muscles are tense. We know, that’s one of the chapters of this story.

And she did listen. Even through the screaming. Even through the kicking. She listened and relaxed her abdomen for the change.

I just hope that she really heard me when I said

“I didn’t want to hurt you. But you need this medicine. Your illness sucks and I wish I wold change it but I can’t.”

I really cannot imagine. I am a nanny and I have been taking care of this family since the babies were a month old. I hate to see them sad and I would give my life for them without hesitation. I can’t imagine how magnified it must be when its your own child. I hope your days ahead are calmer and more joyful.

we are considering it. they don’t have it at the AMC but can do it at the OLVG. but the stress starts at home before we have even left for the hospital so we are still figuring it out. it’s definitely an option though. thanks for your love x

That’s actually a good idea! I think, with time, she wouldn’t get so stressed or anxious knowing that she won’t have to see or feel any of it (under sedation). It might reduce the stress she has before the appointment and during.

I am so sorry you had to go through all this. You and J and of course F. Yes, it sucks. No child should go throught this, no parent. But you did the right thing. I would have done the same. And you listened to her, and you were there for her, and this is what counts. I will bake some of my gluten free, lactose free muffins for you next time. I assure you they don’t taste so bad!

Oh Amber, I know you feel awful at this moment, but its because you are the best Mum that your daughter could have that you feel this way. you are strong and soft at the same time – but be kind to yourself now. sending Love

The fact that you feel so emotional during this time shows that you love her unconditionally. Even though she tries to fight your restraints in this moment, she knows that you’re only doing it because you love her and want the best for her. In the moment she doesn’t think about that, but later on, she does. And as she gets older she will thank you for everything you do to keep her healthy.

I can’t imagine having to go through this and all the struggles you face dealing with your daughters illness. You are a tremendous individual!

Oh my. Oh my. I so so totally get this.
Having traumatic abuse as a child it’s been hard and hugely important to say those No’s.
But here we are and I have Gitelmans and Bartters. All the time I am thankful I am not a parent of a child that has what I have.
You have to do this !!
And yet I lknow you. This is the last thing you would ever force if it meant pain to your child. OMG
I hurt for you and J and for F
What you have to witness every hour of her life.
It doesn’t get easier. You and J have
Provided support for her all the way
And what really sucks to is that we do not have the foundation of electrolytes
That help us cope with any kind of stress. So it makes things 90 percent worse. Most of all loving you up and supporting you and holding your trembling body and heart. Sonja